I was tickling my five year old while we were watching a movie while sitting in my bed. The kind of tickling that ends up in laughter that is only seen and can’t be heard. His entire face was smiling and tears were rolling down his face but there was no sound because he was giggling so hard! Our six year old was beside my husband and we were all cracking up. Then, as is the case with most horseplay, an accident happened. Braden (the five year old) rolled over to tickle me back and when he did he fell on me and landed an elbow into the side of my right breast. I immediately grabbed the site of impact and felt a strange bump.
I excused myself and went into the bathroom and began to feel the bump more carefully, and I didn’t like what I felt. I could feel my adrenaline kicking in and I began to flush with anxiety. I knew. I just knew. It felt like a tumor and a malignant one at that. Now how in the world would I know what a malignant tumor felt like in comparison to any other bump? I was an educator. I began my career as an elementary teacher, then became an Assistant Middle School Principal, next an Elementary Principal and was currently a Director of Human Resources. I had no M.D. How could I possibly know what a cancerous tumor felt like?
The answer is so simple, and so complicated. I knew because I had been feeling a cancerous tumor for about two years. That five year old who was giggling so hard he couldn’t breathe was also bald. Bald from chemotherapy he was receiving to fight a relapse of a malignant tumor that refused to quit attacking his body. There was no known cure for what he was currently facing. That relapse of his neuroblastoma meant he had less than a 10% chance for survival. The tumor had been so large it was pushing organs out of it’s way and after initial diagnosis I felt it numerous times every single day to see if the chemo was shrinking it, to make sure it was dying so he could live. That’s how I knew what cancerous tumors felt like, and I knew that what I was feeling in my breast was cancer.
But an optimistic attitude is a good thing, right? I remember thinking that maybe I was wrong. Maybe it wasn’t really cancer and it was something else. I said nothing to anyone but the next morning I called my OBGYN to set up an appointment so they could tell me that I had it all wrong and then no one would ever know about the moment when I thought I had cancer. It would all be a big mistake and I could focus my time on our son’s treatments. He had more than a 90% chance of dying and I didn’t want to miss one single second of whatever time he had left with us. I certainly didn’t have time to deal with fighting my own cancer. My head believed that I might be wrong, but my heart knew. Hearts always know the truth somehow.
I drove to my OBGYN’s office the next day. I had been with this Doctor since before I was even married. She had been my OB when our daughter, Miranda, was born at 24 weeks and died 15 hours later. She helped me through that very dark time and had been a part of that very sad journey. No parent should ever bury a child. Miranda was with us for that such short period of time, but we were blessed to have had the chance to say hello and goodbye to our daughter. I was able to hold her, kiss her, sing to her, and tell her that I loved her. She died in my arms and the pain of that moment is etched in every fiber of my being forever. I literally felt my heart break open into pieces.
We then began the process of healing and trying to piece those things back together. We decided to try to have another baby, but that ended with a miscarriage. Then we had a healthy baby boy, Zach. That was followed by another miscarriage and then the birth of our second son, Braden. My OBGYN had been through all of these things with us and when she felt that lump she looked straight into my eyes and I knew I was right. I smiled, then started laughing and said, “we both know what it is”. She smiled back and without hesitation she said, “I will personally drive you to every chemo appointment if you need me to”. She offered to get me in for a 3D ultrasound that day but I explained to her that we were headed to Philadelphia in three days for a treatment for Braden that was his only hope for survival. I explained to her that this whole tumor thing would wait until we got home. No one in the room bothered to try to argue with me because they knew I was right and they also knew they could not change my mind.
I still hadn’t told anyone. I didn’t know how. How do you muster up the courage to look your husband and your friends in the eyes and say, “You are never going to believe this but I’m pretty sure I have cancer too”! Their lives had been changed by Braden’s initial diagnosis and year and a half long battle, and now the devastating news of his relapse and the words “no known cure”. They were still reeling from that direct hit to their hearts, so how could I add to that pain with my own bad news. We were headed out of town for a Phase One treatment for Braden and if it didn’t work, he had no hope of survival.
I kept my secret. I decided not to tell anyone until I had a 3D ultrasound and a biopsy and it was officially confirmed. I told no human, but I told God. I talked to Him about it every day in my continuous conversation that I had with him. My focus was on Braden’s treatment and on trying to heal him. My cancer would wait and I would wait to tell anyone until I knew. In the meantime, we got on a plane to Philadelphia and began his treatment. We came home about three weeks later and we had a window of four to six weeks until his next scans. I knew this was my opportunity to get a real answer about that bump.
I began with the 3D ultrasound. Just a few minutes after the scan, “they” came back with long faces and sad eyes. It wasn’t fluid filled and they suspected it was cancer. I told them I knew, that it would be okay, and thanks. I scheduled my biopsy and the night before that biopsy, I realized I was going to have to tell my husband because someone was going to have to pick the boys up after school while I went to get my biopsy. I didn’t want anyone to go with me. I didn’t even want anyone to know, probably because I didn’t want it to be real and if I said it, then it would actually be happening.
The results came back showing invasive ductal carcinoma, officially cancer. I finally told my friends. They were amazing, supportive, and awesome. I only had one fear and that was that I would be taken away from Brandon to fight my own cancer. I had absolutely no fear of my cancer. I elected to have a double mastectomy because I was so very tired of cancer. I wanted the most aggressive tact I could take toward fighting my cancer because I didn’t have time to mess around with it. I needed the option that would give me the best chance for the least amount of time in treatment. My breasts were trying to kill me, so they had to go. I would also elect to have my ovaries taken out because my breast cancer was very hormone receptive.
I wasn’t sad about that at all. Bring it cancer! Seriously, bring it. Finally cancer had chosen a fair fight. I wasn’t a five-year-old child whose biggest worry should be why can’t I have more ice cream, not wondering if I will live to see six. Cancer wasn’t stealing my childhood and determining that I would spend almost every day at the hospital having poison dripped through a central line that had been surgically implanted into my chest like it was my son’s. Cancer decided to fight a grown woman and a very angry grown woman at that.
I woke up from my double mastectomy with two friends by my side excitedly telling me that my lymph nodes were clear so no chemotherapy for me. I was so happy. That would mean I could resume everything with Braden right away and I would keep my long locks. That celebration was a little premature as a couple of days later, the nurse called and explained that further testing revealed that I did have node involvement and would require a second surgery to get more nodes out. Currently, I was at Stage II but if any more lymph nodes were involved, it would be Stage III. Of course I would need more surgery and chemotherapy. I mean to think it would be otherwise was so ridiculous on my part.
I began chemotherapy. Braden and I had chemotherapy on the same days in two different locations in Kansas City. My husband took Braden to his chemo on the days that I had my own. On our off-chemo days, Braden wanted to go to the park and play. I wanted a nap. We went to the park because if his days were going to be numbered, we were going to take advantage of every moment we had together and that meant I would just have to suck it up and follow his energetic lead. We got through chemotherapy together.
I healed, my hair grew back, and Braden’s cancer treatments were working. Then the moment when Braden was declared to be in a second remission. That was a glorious day! Life went along well for a couple of years until he was diagnosed with a secondary leukemia that was caused by the treatments he had to save his life from neuroblastoma. They had been so strong that they deleted a chromosome causing that leukemia. Seriously. We were told he would die, but Braden did get that memo.
Braden also has autism and thanks to his autism, he had no idea that he had cancer. He thought this was just the way life was for everyone. He thought everyone got central lines, lived in the hospital, had poison dripped through their veins, required blood transfusions sometimes more than once a day, hours of scans, rushed visits to the Pediatric Intensive Care Unit, and more surgeries than this mom could count. Because he thought this was just how life is for everyone, he had no idea that he was owed something different, something more. So he was happy and grateful. He focused on what he did have and did not worry about what most people would say he didn’t have. He didn’t know the doctors said he was going to die, so he just kept living. Not only was he living, he was happy and joyful and thankful.
I think back to my cancer diagnosis meeting, when my breast surgeon told me that while I had Stage 2 Invasive Ductal Carcinoma, I had a treatment plan consisting of therapies that would shut down the activators of my cancer. In other words, scientists knew what helped flip on the switch that turned my cells cancerous. The best news is that they also knew what treatments would keep my body from flipping that switch to kill the cancer and prevent it from coming back.
I remember thinking that I should have been happy but I sat there with my jaw gaping open. My breast surgeon stopped and said, “Are you okay”? My answer was, “No, I’m not”. Not because I was upset or worried about my chemotherapy and follow up therapy that would take seven years to complete, which is what I believe is what she thought. I was absolutely shocked because I had been asking for that type of therapy for our son for almost 2 years.
Repeatedly, the doctors explained to me that that type of therapy didn’t exist for our son’s cancer but that type of treatment approach was just starting to gain some ground for some cancers. They called it “genomic research” where the scientists looked at the cellular structures and targeted pathways that the cell used to grow and then used specific therapies to shut those pathways down so the cancer couldn’t grow. That kind of research sounded amazing and I wanted it now and not in the future. Braden was facing a relapse of his neuroblastoma and there was no known cure for it. His odds of survival were less than 10% while I had a whopping 86% chance for survival.
It just wasn’t fair. It wasn’t right. He was five years old and I was most certainly over five years old. I had played in the backyard, been to the swimming pool, had sleepovers with my friends, eaten ice cream, gone camping, caught a fish, learned to ride a bike, learned to drive a car, gone to college, gotten married and had children. The doctors were saying there was more than a 90% chance that Braden would not get to grow up to do those things because there was no research for his cancer.
After recovering from my disappointment, I began researching to find out why there was such a lack of treatments available for Braden and what I found out was very shocking. Childhood cancers are very overlooked and underfunded in the world of cancer research. I assumed cancer research was cancer research and that children would have an equal piece of the research pie and therefore have treatments available to them. I was very wrong. Childhood cancer is the number one killer by disease among children yet all childhood cancers combined receive less than 4% of the National Health Institute’s cancer research budget. Breast cancer alone receives about 12% of that budget. I was grateful for my treatments but what I really cared about was having treatments available for our son.
I talked to my amazing friends and they were equally surprised and disappointed. We all decided that we had to do something to make a difference for children with cancer and the idea to create our own Non-Profit organization was born. As of 2018, we have funded over $2.1 million in research studies in only six years. We recently made a commitment to fund three individual $1,000,000 research studies to Children’s Mercy Hospital in collaboration with KU Cancer Center. We are honored to bring hope to children with cancer to help them have hope for a future.
There’s a lesson in that for all of us. Cancer can take life, but it can’t take away living. He played, he hugged, he snuggled, he loved, he showed me the meaning of “living”.
He is still alive and still living. The doctors were able to throw some crazy ideas out for us to try, they worked, he qualified for a bone marrow transplant which was the only cure and his brother, Zach, was a perfect match. Braden is currently cancer free from both his neuroblastoma and his secondary leukemia and is still a happy, joyful, loving boy.
Braden’s Hope For Childhood Cancer is a 501(c)(3) whose mission is to raise awareness and funds for research grants to shut down the activators of childhood cancers. Braden’s Hope has made a commitment to award $3,000,000 in three years for three individual $1,000,000 research studies. Those studies will be done through Children’s Mercy Hospital and KU Cancer Center.
Their mission is to raise awareness and funds for research studies of targeted therapies that shut down the activators of childhood cancers.
Their vision is that they can raise awareness and bring HOPE to children with cancer so no families have to hear the words, “No Known Cure”.